Friday, September 15, 2006

Weary of Lack of Acceptance

I started writing this as a comment to Soapbox Moms latest blog entry, http://soapboxmom.blogspot.com/2006/09/this-is-my-son.html and ended up tying in a few issues that have been weighing heavy on my mind lately. It grew to such monstrous length that I’m embarrassed to post it to her comments section, and hope she won't mind my publishing it here. It feels a bit embarressing to do this, but there are things I want to say here and some issues I think are important. So…here it is:

From someone who has to take an occasional break from blogging due to all the intensity...

To Soapbox Mom, I don't blame you for feeling frustrated and discouraged. It's hard to write about the things you love and care about most in the world knowing there are some people out there who will refuse to understand. The lack of respect and downright bile some parents show towards acceptance of autistic people can become disheartening. When you look in the face of your beloved child, it can also feel personal.

I find it especially hard to see autistic adults and parents who seek acceptance for their children ridiculed for speaking up about the things that really matter. They are brave to raise these important issues in the face of so much rabid opposition--and it's hard to see them slapped down time and again by militant biomed fanatics. When I see that it makes me feel a bit like watching someone ridicule my own son, because I know the issues important to autistic adults will one day be important to him. Seeing that can be very discouraging and more than a bit scary...I don't want to see him treated the way I've seen autistic adults treated recently. What makes the whole situation REALLY upsetting is that the very people who attack autistic adults and parents who speak out for acceptance on forums and blogs are also the parents of autistic children. They should KNOW BETTER for the sake of their own children, if for no other reason.

For my own sake (as an autistic adult) I don't care so much. I'm a crusty old gal and most of the time I can take it. But I don't want to see that sort of ridicule and dismissal in my SON'S future. And I especially don’t want to see that sort of treatment meted out by the very people who have the most reason to understand: parents of autistic children. I don’t care what their belief system is in terms of curing autism, they should show respect to all autistic people in the same proportion to the respect they would like given to their own children someday.

I cannot fathom why some people do not understand that very simple and basic point.

I also think it's unlikely that those very vocal biomed zealots are in the majority. There are probably more of us out there than there are of them. We are less visible simply because we are not fanatical.

For me personally, this is a long term labour of love, not a war campaign to be won in a quick short battle as it is for most fanatical biomed people. What I see with that crowd is the need to win as many people over to their side as quickly as possible to allay their own doubts about how they're handling their child's autism.

I think they know deep down in their hearts that the 'cures' of today will be one day be viewed in the same way as the ‘cures’ of yesterday...ineffective at best, abusive at worst. Theirs is a fanaticism of fear. What if they are wrong in their assumptions that autism is a horrible disease? What if the cures they espouse actually turn out to do more harm than good? Instead of contemplating those issues and thinking about the long term ramifications for their own children they turn to ‘faith’ in what they can not see and can not prove.

So there is a difference of tactics between us and them. I think we're in this for the long haul while they're in it for the quick victory. It’s frustrating and tiring to deal with people like that. So (to Soapbox Mom) yeah…I understand why you’d want a break.

But I do hope that as some point soon you'll return. There are many people who will be REALLY happy to see a new entry on your blog sometime in the future. Whenever you feel like writing...because even if you don't know we're here listening, we are.

And you ARE making a difference.

And to those parents of autistic children who think it’s great fun to disrespect autistic adults and parents who seek acceptance for ALL autistic people…look in the face of your own child, and remember this: those who fight for acceptance for autistics are paving the way towards a better future for your own child.

Biomed zealots have just as much acceptance for autistic people as you do. After all, we're raising them too. We won't all be lucky enough to cure our kids. Issues that are important to autistic adults are things we hope our kids won't face at all if we can give them the help they need now. You truly have been suckered by all those who tell you mercury poisoning misdiagnosed as autism can't be cured. That's why people like me keep trying to drill this into your heads. You CAN help your kids avoid life as a disabled person.

Personally, I can tell you the moment I began to love and accept Ben unconditionally, is the moment I no longer had any interest in bio-med and curing. I know that is hard for some people to accept, but it is true.

I could say I came upon it on my own...and it would be a lie. It took my son's fifth grade teacher, who loved him unconditionally and saw his gifts, for me to wake up. She ASKED to have Ben in her classroom, and she treated him like gold. I don't know why she had a heart for him, but she did. She totally changed our lives.

The strange thing is, her last name was the same as Ben's Godmothers maiden name, my best friend in high-school. For those of you who believe coincidence is divinely inspired...it took something like that for me to wake up!

Thanks for this. Exactly the same experience for me as R.B. I found the quest to cure Adam exhausting and depressing. We still do many things for Adam, but once we came to see him for who he is with autism, life became so much happier. It will always be full of challenges, and the biggest hurdle will be the discrmination that is cast upon anyone in this world with any sort of handicap.

That is just morally repugnant -- non acceptance, that is -- on so many levels.

Maria, I've always felt respect for you because I've never seen you show anything but respect for others. If you'd like to discuss your thoughts about acceptance I'd wouldn't mind hearing them, but I would ask that we not get into the biomed stuff. There are better places for those discussions. No disrespect intended, of course :-) Just that I've already been there done that, read it all, puts me to sleep. How's you're little one?

Rose, I'm glad you had that teacher, and wish you could ship her to us lol. She sounds like a peach. It's amazing how someone can make a huge difference in your life by a simple act of kindness and an open mind. I don't doubt that you will touch many hearts in the same way.

Estee, I think this is a story most of us can tell to some extent. There is almost always the shock of the unknown to deal with when our children are diagnosed and I don't think anyone should feel shame over that. And yes, there are hurdles and there are difficulties. The hard part, and the difficult part for us as parents is finding the positives, not because we are blind to the negatives, but because the positives are where we find the best way forward.

ForeSam, I've asked you not to comment here. I really have nothing to say to you and no interest in what you have to say. I felt sorry for you at one point, but you've lost any sympathy you had from me when you verbally attacked a little autistic girl. That's all I have to say to you. All further comments from you will be deleted.

I doubted for a long while to post here. Probably I do not know if I will be misunderstood, but perhaps is a risk that it will be worth to take. Perhaps. There is no intention to be disrespectful for nobody´s feelings/ideas, but also to present my own view of self-respect in my personal options.

Not only other parent can read my words, also sisters and brothers of autistic children/teens and grandparents. Even autistics, children, teen and adults, can read my words. All deserve my consideration because My parents,my husband, my NT daughter and my autistic son could read my words...And beyond this, all human being deserves respect.

Many many times, the same arguments can be applied to one side or the other with some strategic changes of words, because many defenders of extreme positions use the same basic words and arguments. For rant, anger and improductive exchange of opinions, the only difference between them are the excuses (“they started it” is the most I hear).

Nobody has the absolute answer. Every child is different. Even when I respect every approach for every parent for every child of their own, I have the same right- and the same duty- and I have the right to ask for the same respect.Every parent is different, and there are so many biomedical parents as parents doing biomedical. And yes, I am doing biomedical.

To advocate for autistic right does not give to anyone the right to have judgements about my feelings, thoughts and reasons as if he/she knows something- a bit- about what am I doing, under the advice of who, when, where,why and based on what. Because of privacy almost nobody knows the details.

why is so easy to have conclussions? Where is the respect for my son´s health? Where is the empathy, the consideration and the idea in advance about what are the feelings of other people?.Yes, there are extremists views, but these are very few in my experience. Internet is wonderful. But one of the most problematic aspects is how despersonalize the interaction. I can not understand how people could talk, looking at the eyes of other parents/adults/children, the way that many times they write- about autistic adults, autistic children or about other parents, whatever the side.

I have not problems with aceptation of my autistic son. I have the same strong feelings of love of any parent writing in the autism-hub about aceptation of my son´s differences in terms of MY personal learning and grow and the human being he is. But it is certain that I am very committed with my son´s health and future and nobody is taking in general the effort - or the time or has the interest- to understand the others, especially if they are not the extremists. It is like a mental construction of a reality "that is not" many times, a preconcept in advance that if it is not white is black. Sorry, for me it is all the shades of grey, such as a wise friend named his blog.

and thank you for asking. My son is doing wonderfully. For a child with a prognosis of total autism, we have changed totally the prognosis, with the treatment of more than 30 medical conditions properly detected ( and treated. And I am extremely interested in ethics, science and nurturing and to be the best mother my son needs.And also, I am very glad by SBM´s son progress.

Perhaps , things are at the point that the dialogue is impossible. Perhaps nothing will change for better but for worse. But if the same things are said over and over repeated we will only run in circles.After near 12 months of posting, being moderate, trying to have the best of neurodiversity and biomedical- and applying-, I have similar feelings of Soapmom box ( but not the same), from the other side of the mirror.And perhaps for many people, what other people feel/think ( and how, related to answers or posts) don´t care. It is not my personal view but it is the place we are going to now.

My post was longer. I have tried to present you, with your words and with an strategic change of words, my feelings and how it feels for a moderate, trapped between two extremes and belonging to neither. But obviously I accept you are not interested about.

And I understand, such as I have done an effort to understand to everyone in touch with me, a courtesy that few few times I have seen retributed.

Maria, I’m glad to hear your son is doing well…but also frustrated and saddened by some of the assumptions you’ve made here:

When you write this: “why is so easy to have conclusions? Where is the respect for my son’s health? Where is the empathy, the consideration and the idea in advance about what are the feelings of other people?”

I’m really confused by that. If I voice an opinion about the actions of fanatical biomed parents and groups, how would that disrespect your son’s health? You don’t have to listen to my opinions; you’re free to treat your son in any way you see fit. You obviously love your son, you are obviously an intelligent woman, and free to do as you choose. If my opinions on treatment are at odds with yours, it’s not meant to be a personal attack on you, or to say that you’re not competent to make your own decisions.

If, on the other hand, you’re saying that speaking out against groups that are pushing biomed therapies shows lack of empathy and consideration, for crying out loud…this is a teeny tiny little blog. It’s not like I’ve taken out an ad in the New York Times! The industries and groups that push biomed treatment are so ludicrously well funded by people like CAN, Generation Rescue and Autism Speaks and by the profits of their own endeavours, how on earth could my little pip squeak voice have any impact against the likes of them? Sheesh. I’d hate to hurt their feelings (rolls eyes).

I’ve spent the last 4 ½ years reading. And thinking. And LISTENING. And talking very little; I’m not much interested in conversations and chit chat. I’ve spent countless hours obsessively reading research papers, medical and biomedical websites, books, numerous forums, support groups, blogs…you name it, I read it. If I have opinions and conclusions to speak on, I haven’t pulled them out of thin air.

In those 4 ½ years I have seen, time and time again, that the voices that need most desperately to be heard, the voices that have the most important things to say, the voices of *autistic people* have been disregarded, slandered, put down, misrepresented. By who? By fanatical biomed parents. Notice I said ‘fanatical’? I’m not including all biomed parents in that statement. Most people don’t push medical treatments as though they were a religious dogma sent by God. But there are a vocal few who act otherwise.

How would you feel to see your own son treated in that fashion? Our children will have their own opinions someday, I hope they will enjoy more respect than autistics are getting today.

If my speaking out against this situation offends you, I’m sorry, but I can not be silent any longer. Our voices need to be heard and we need to start paving the way for our children’s voices to be heard, including your own son’s.

If you’re not part of the problem, Maria, you shouldn’t take offence because what I’ve said isn’t directed at you personally.

Hi Mum is thinkingThank you for your explanationBy no way I tried to talk to you when I wrote this. I agree with you in almost every word you wrote in general.In fact, I am totally in disagreement with the most fanatical biomedical positions and I have no problem to tell.BUT ,also, I have been over and over- not talking personally about you- considered in the generality and mistreated in consequence. Therefore If I am doing chelation- that I am- and I have told so when I have been asked, in advance I have been considered with my son´s view poisoned, doing harm to him and totally misleading and told so. Even more, when I have tried to explain- privately because of privacy of my sons- I have been systematically dismissed ( when you have no answer to a proposal of explanation you understand). BTW, if you are interested I have no problem to explain :), privately. Beyond this, The way that this kind of medical approaches are considered are different for each family. For us, it was a long path of mainstreamed tests in mainstreamed labs- repeated up to 5 times several of them- and there were agreement- not commercial labs, no mail sample.By no way I am offended by you ( or someone else) warning about potentially dangerous medical procedures. By no way I am offended by you ( or someone else) asking for respect and consideration of autistic adults/children/teens. I can be in disagreement with Camille, you , Kevin or Estee- even profoundly- but my son will live in a better world if all of us advocate for a more inclusive and respectful of differences world and I ahve told them. What I am in disagreement ( and I have been offended by) is the consideration in advance that I am a fanatical or I have been misleaded or I have the same extreme ideas of other people doing biomedical or I am not being scientific in my analysis. What I have been offended is by the way the generalization is done, for example when the murderers of autistic children have been discussed. What I am offended by is by the lack of consideration of the feelings of many parents that, being moderate, are considered as all the same like the most extremists views. What I am offended by is the idea that all has been done and the science is all done relation to the impact of vaccines in autistic children, neglecting all our anecdotic experiences- very very hurting- without consideration. What I am offended by is that - because of a lot of questions not related specifically to my personal view or of many others- in general there is a tendency when talking about biomedical parents about not caring what is said, how is said. And It matters. Please look around and, even when the extremists view are from a few, the level of the dialogue can not be lower in the generality of the blogs- except a very few in the hub and outside the hub. And also, there is from several of the ND defenders a tone of " we are owners of the truth" that have no place in ASD debate. Nobody is the owner of the truth- in terms of science. Today, we have all opinions and personal views of the truth, but this does not imply that is the truth.

Always matters what is said, how is said and when is said because all of us are in this field trying to do the best for our children.

What I have tried to propose over and over is to move on to a more safe place for all of us, the moderates and people with open mind that can hear to really have a dialogue.I apologize if you understood this as personal because it was not. But in the same way you say it is not personal to me, please look around what is said about biomedical parents (and no differences are done).I feel close to neurodiversity ideas. But I also feel that because of negative experiences with some group of parents with some extreme view (and I do not share the tone/ the analysis and the conclussions of them) the debate has centered about them with a tone/ analysis and conclussions from neurodiversity advocates that I do not share also.Again, I hope that now you understand me better and I would be glad to continue this exchange of opinions with you.Thank you very much for your time and your considerationMAría Luján

Mom26children, thanks for your comment :-) I was very happy to have discovered your blog recently…wow, what a lot of experience you have to share with us! It’s great stuff.

Maria, talking between different factions is tricky, and difficult to avoid offence for everyone involved, which is why I generally avoid it. The fact is, there ARE some people who enjoy debating with the ‘other side’, but it’s inevitable that you’ll end up feeling disrespected or put down if you choose to debate. That’s just the nature of the beast. Personally, I feel I’ve already read enough to know where I stand, and have no interest in debate or comparing notes on personal experiences with biomed parents—there is just no point in it, and it could end up being messy and ugly. If I were interested in that sort of debate I would post on one of the many forums that are available…I read them, but not interested in joining the jousting that goes on. Ick!

I guess it’s like this: If I were a staunch Catholic, and you were my dear Jewish friend, and I invited you to my house for tea and a chat, I wouldn’t spend our time together trying to convert you to my faith. And I would be offended if you spent our time together telling me why your faith was better than mine or explaining why it helped your son and why you thought mine was lacking. I don’t think you’d do that, and I certainly wouldn’t do that to you. So you’re welcome to tea as long as we agree that we disagree and leave the biomed debate at the door. There are other issues to discuss, anyway.

My post about biomed fanatics was written about the likes of John Best who (using the tea analogy) promptly showed up, broke down the door when I said I wasn’t interested, tracked doggie poo all over my nice clean carpet, threw the teapot against the wall, did something unspeakable to my cat, then called me a ‘f***ing dumb broad’ and berated me for not agreeing with his beliefs and not joining his faith.

Which proved my point quite nicely: fanatics are scary and their company is best avoided. Like most religious fanatics his opinions are inspired more by ego than thought; adding converts bolsters his ego. Opposing views are a threat to his ability to add converts, his ego has a boo boo, thus the temper tantrum.

HiOK, I understand your position (and of course I accept it). However, for me the biomedical approach is not a system of beliefs. It was/is/will be something totally different: a tool to improve my son´s health.And no, I have not /am not/would not spend my time trying to "convert" anyone, you are right. I prefer to look at what is confortable for the person with who I am talking- especially in so delicate questions as our children´s health-, in a way the productive exchange of opinions can be possible.Thank you for your clarification.All the bestMAría Luján

What I am in disagreement ( and I have been offended by) is the consideration in advance that I am a fanatical or I have been misleaded or I have the same extreme ideas of other people doing biomedical or I am not being scientific in my analysis.

I don't think anyone has called you fanatical, María. I think I made the observation that you perseverate, but many of us do too -- that's not the same thing.

We've discussed your son's medical findings privately, we went through some publications on reference ranges, what to expect with chelation, and so forth, and I told you my opinion. If you believe your son was heavy metal poisoned, you may or may not have good reasons to do so. That's fine. Kids do get heavy metal poisoned. And you didn't use a quack lab. In the US, when leaded gasoline was used, lead encephalopathy was fairly common.

But you try to argue this in autism forums, so we come back to the science. Is there evidence of higher mercury/lead concentrations in blood/urine of autistics vs. non-autistics? There isn't, frankly. And you keep mentioning anecdotal evidence, and how important it is to listen to the parents. What do you think should be done about anecdotal evidence that the most common cause of regression is a stressful event, such as the birth of a sibling? I don't see much hype about that.

I really don't see how heavy metal toxicity might be related to autism, except tangentially. Do you also go to mental retardation forums and urge people to think about how heavy metal poisoning might worsen mental retardation? Would you find that a worthwhile endeavor?

Thank you for your understanding Maria, and you're right, there is more and less to these things than 'belief'. Most of us have done a certain amount of research before choosing a path to follow, and most of us are willing to adjust that path as new information comes in. A 'belief', on the other hand, is something based on faith, not facts.

There is, however, the problem of sorting through the available information. Much of of that information is conflicting, and most of us don't have the scientific knowledge necessary to interpret what we read. To those of us in that position it's crucial to have a balance of information from boths sides of a debate. When I first started my quest for information there was a huge slant to biomed commentary, and IMHO that imbalance continues; I'm extremely thankful to those individuals(many at the hub) who have given us access to the other side of things. We all need to hear both sides to make informed decisions (unless we're simply looking for mindless converts, which is where my frustration with fanatacism comes into this).

So I keep reading. I'm sure you do too. I try to keep an open mind. But joining in the debate is simply past my ability to tolerate. It's too stressful.

And like I said earlier, there are many other important issues we all need to talk about that have absolutely nothing to do with biomed. I'd hate us to lose the ability to deal with those issues simply because we're too bogged down on this one aspect. The biomed debate may be important, but perhaps the stress and bad feelings it's created is keeping us all from working together on things we can actually do something about. Like improving education, acceptance for our children in the community and giving them the support needed to be as independent as possible as they mature. And. Happy stuff, like how cute and funny they are. That's important too. I bet your son is a sweetie, I'd love to hear more about him.